Daily Mail - beating CFS with exercise

[Woolie]

@Woolie my onset and for the followingt 8yrs of illness did not fit the ME model, I attended a few support groups and thought to myself, " man, I don't have what they have!". I was initially diagnosed with PVFS. It all changed when I improved to 90% and started exercising.

Granted, her doctor diagnosed her and she feels that's what she had, but It's seems odd to me that she still doesn't understand this illness. Did she not do her own research to educate herself over the years that exercising is contradicted and doesn't lead to recovery? Why don't these celebrities just accept that they never had ME and stop advertising that exercising and lifestyle changes lead to their recovery?

@Mij, I totally see everyone's fury, I share it... and don't in any way want to say its not warranted!

All of us on this thread, including me, agree these kinds of stories are damaging. I just put more of the blame on the journalists than their subjects (poor woman, her illness -whatever it was - destroyed her hopes of a career as an olympic athlete.. okay, she made good in the end, but at the time, must have been unbearable).

Don't get me started on the gutter press, they love a story about how somebody ate some wonder food/did some great programme and "beat" cancer, autism, MS. etc.... and then there's the terms like "beating" and "battling" in stories about illness. Like somehow ill people just have to "fight" hard enough and they will win.. grr...

The only point I wanted to make earlier - and probably not the right time or place - was in general we should be wary of judging those who are not as severely ill as us as not having "real" ME (the "half-sick" as I saw it referred to in one post!). If someone makes a full recovery, does that mean they couldn't possibly have had "real" ME, it must have been depression all along? How can we say that in our current state of knowledge? I'd hate people here who are more ill than me to judge me as not having "real" ME, just depression! ME's probably a group of conditions, but we're all united by our desire to be treated appropriately and for our conditions to be fully researched. If you lose just 3 years to the illness, like Johanna Griggs, or 24, like me, I want that for you.

The answer: maybe journalists should be required to put a disclaimer on their medical miracle articles like on diet ads: "Results not representative"?

 

[Mij]

@Woolie no problems To answer your question though, if someone fully recovers from ME and exercises with no PEM, then they don't have ME. The exercise impairment/dysfunction and PEM is what makes ME distinctive from other illnesses.

Are you able to exercise on day 1 and 2 without experiencing PEM?

 

[Snow Leopard]

We know from epidemological studies that around 10% of people with certain viruses (EBV for example) end up with post viral fatigue at 6 months (can meet CFS criteria), down to about 5% after 1 year, then a few more recover within 2 years but most don't. A few of those who 'recover' end up with a relapsing-remitting condition, so in my estimations, around 30-40% of those ill at 6 months will be still ill long-term.

I think perhaps 'more things' go wrong for the condition to remain long term vs the first 6-12 months.

 

[Woolie]

@Woolie no problems To answer your question though, if someone fully recovers from ME and exercises with no PEM, then they don't have ME. The exercise impairment/dysfunction and PEM is what makes ME distinctive from other illnesses.

Are you able to exercise on day 1 and 2 without experiencing PEM?

@Mij, actually, I'm a relapsing-remitting case. For the last 8 weeks, I haven't been able to get out of bed, severe flu like symptoms, dizziness, headache, hard even to type, let alone exercise! But sometimes, during remissions, I've been able to exercise even on consecutive days without ill effects.

I had a near-complete remission for about 3 years (1996-1999), with only the occasional "flares", which were like severe flus lasting a week or so each, brought on by what seemed to be infections not exercise. But that was a while ago. The remissions just got are shorter and were not as complete, and now I have to be careful with exercise even at the best of times.

I don't think the relapsing-remitting pattern is all that uncommon (somewhere on PR, someone did a survey on this). For some of us, the remissions have lasted long enough to look like recovery, at least when we were in them .

Its still all ME til we know for sure whether these different presentations - stable, relapsing-remitting, steadily resolving, progressively worsening - reflect different disease processes.

 

[Woolie]

We know from epidemological studies that around 10% of people with certain viruses (EBV for example) end up with post viral fatigue at 6 months (can meet CFS criteria), down to about 5% after 1 year, then a few more recover within 2 years but most don't. A few of those who 'recover' end up with a relapsing-remitting condition, so in my estimations, around 30-40% of those ill at 6 months will be still ill long-term.

I think perhaps 'more things' go wrong for the condition to remain long term vs the first 6-12 months.

I think that could be right, @Snow Leopard. Some also might reexperience problems way further down the line that don't show up in these studies.

 

[Research 1st]

Perhaps we can make a Forum new years resolution that in 2015 onwards we will all try and ignore the British media propaganda when it comes to CFS ME making us feel understandably upset and offended over articles that de-legitimize us as people with a potentially severe organic disease process. We are rightly peeved as a diagnosis of CFS is not a psychological diagnosis, and thus exercise cannot improve or cure the condition as CFS is not a process of de-conditioning or abnormal psychology. It is, but for people who propagate disinformation.

It would seem likely over the next few years the articles you currently read (which aren't evidence based) will be ill advised to print as a significant percentage of people diagnosed with CFS will have evidence that their bodies are harmed by exercise because of a scientific breakthrough in biomarkers that demonstrate subsets diagnosed with CFS can be extremely unwell at a cellular level, which exercise worsens when the patient remains untreated with the required therapeutic agent, such as if being misled that CBT/GE/ reduces symptoms in inflammatory disorders of high cytokine expression.

When that day occurs, the media will be told to stop bleating out garbage to the sheep who need to be fed on lies in order to feel they are helping disabled people by harming them (Psychiatrists and their followers of organic ME CFS denial).

In time patients will be able to sue newspaper groups in the same way others can for disability, racial, sexual and religious discrimination. Meanwhile, if people are well enough, it might be useful to read up on various legal cases over the years in which members of the public actively and successfully sue the media for reporting false facts about a minority group, in which they reside.

Ending hatred against CFS patients (advertising harmful therapies with no scientific evidence of benefit) is a primary goal in my opinion for CFS activists interested in sufferers obtaining equal human rights with others who live in a democratic society that claims to protect vulnerable people.

Because of the age of onset (childhood/adolescence), physical disability, cognitive impairment, and level of social exclusion and disability, CFS sufferers are without doubt, vulnerable people.

With enough work (In the UK) you can get yourself classified as a vulnerable person, then use this official legally binding status in years to come to take legal action against newspaper groups who help foster doubt about the legitimacy of your suffering, through absurdest myth making stories, such as 'exercise' cures people, who are pathologically unable to exercise.